Anyone know what to expect downing off pred if I haven't got PMRA. Been on for 6 or 7 years.

[Rocketronzy]

What I mean is just coming off pred. 😱😳

Only this weekend talking to a long turm suffera can't seem to get past. 5.

At four she feels dreadful

Her husband says to her. " M. For goodness sake just the bloody tablets you 75 now. 👍👍😱😂😂

[jinasc]

One thing, I would not contemplate going below 5mg, in fact possible 7.5mg, without having a synacthen test. This sees if your adrenal glands have woken up...........sometimes (not often) it shows they have not woken up and that is the last thing you do not want to know as if they are not working an 'adrenal crisis 'and that is life threatening.

I know a couple of people with PMR and GCA who when tested, after long use and high doses, there adrenals just did not want to wake-up so they are now on pred for life and with no problems, just looked after and tested to see if they have enough.

I am not in the business of frightening you or your friend, just make sure you know what is what.

[Rocketronzy in reply to jinasc]

Thanks

I'm not happy at all

I'll let you know how it goes. 😬

[PMRpro Ambassador in reply to Rocketronzy]

Since you have been on pred so long you CAN'T just drop to zero as quickly as your doctor is saying - it is nothing to do with PMR, it is adrenal function. From about 5mg down you MUST go slowly to allow that to return - even if the synacthen test shows your adrenal glands are working they still have to be given a chance to work.

As jinasc says - at the very least demand a synathen test at 5mg. And find another doctor who will allow a slower reduction.

Of course - if you have PMR, the symptoms will return eventually when you get to too low a dose of pred to manage it. But that is the least of my concerns to be honest.

[Rocketronzy in reply to PMRpro]

Thanks for making it all very clear. Do you know what the NHS recommends.

What I may quote to him?

Now he bangs on about my bones. Which I feel are fine. I am very fit but feel I want be if I follow there stupid plan.

On my last visit he kined of smirked as I wad leaving.

You want like it when your bones are crumbling. 😱

This morning I just took 10

Where though my weekend holiday. I have tacken 15 for three days. Already feel pain s in my muscles.

But let's see I feel in the morning at 5am or before. 😲

[PMRpro Ambassador in reply to Rocketronzy]

It isn't so much the NHS per se - it is the expert endocrinologists and rheumatologists.

No GP would smirk at me and me see him again. There would be a complaint filed. And I would vote with my feet.

By no means everyone develops low bone density when on pred. By no means everyone with low bone density breaks a bone. And many people who break bones have normal bone density. Only a dexascan result can really say much - he can't see through skin! And even then, your bone density might be low but you have no problem.

[Amber1414]

First I want to say that the last visit with my rheumatologist he made me feel better by saying that if I had to take 5 mg the rest of my life he wasn't worried for me at all. I still resist that thought though and am trying to get off altogether. Just don't be in a hurry to get off of it. If you have to, try reducing by one mg at a time and wait 2 weeks before going down maybe 1/2 mg more, etc. If you can't keep going, go back to 5, be patient and try again in a month or 2.

[Amanda_iona]

Hi ronzy

My mum has been on pred for nearly 30 years and cant get below 5 mg, she is now 87 and in good form for her age. She lives independently, can go for walks, never has broken bones and her memory is better than mine! Her main problem is lack of muscle strength, but that could be mostly age. Her GPs arent very helpful but have accepted that she cant get lower than 5. I suspect that she had poor advice 30 yrs ago and now it is too late for her adrenal glands to get going again. But she has a good quality of life. Of course not everyone may be so lucky re side effects but just to reassure you that your GP may be wrong.

I now have PMR myself, but am so grateful to the good advice on this forum and intend to get off pred slow and steady as advised. I sent Mum the go slow reduction plan but it didnt work for her and to be honest she is not that motivated, she is happy sticking with 5mg..

Amanda

[Rocketronzy in reply to Amanda_iona]

Thanks a lot for that that's the way I feel but it's going to be a battle to let me be.

I love and enjoy badminton table tennis. Etc but I am frightened they will reck it all for me. They wouldn't give me any ones.